My Cholesteatoma Requires Surgery — Share Your Experience

Hi there.

I've had hearing loss in my left ear for a few years and different tones / types of tinnitus in both ears, as well as ear infections every 18 months or so.

After some issues with my left ear, I have been diagnosed with Cholesteatoma. I had a CT scan to confirm the extent and have been told this will likely need surgery.

I am a bit apprehensive about some of the risks / side effects of this, such as the loss of taste, possible nerve damage, and about existing tinnitus getting worse. I also have heard it may also be possible to try and repair some of the hearing loss.

Are there are any other members who have had the operation done who can share any experiences and what things were like afterwards?

 

So I thought it would be useful to post an update in case it helps anyone else in a similar situation. My opening post as above was in April, after some back and forth I was confirmed with a cholesteatoma and added to the NHS wait list. Unfortunately, I was told wait times were 1 year + and so I decided to have the work done privately and was fortunate enough to be able to use savings to pay for it. From being diagnosed it was just over 6 months until the surgery which I had 4 days ago, which was originally booked in as a mastoidectomy (remove the disease and affected bone and tissue) and ossiculoplasty (attempt to rebuild the ossicles)

The time between April and the surgery was mostly uneventful, I had a few dizziness and nausea spells which I was given prescription medication for. The bad smelling discharge and pain which had started around 18 months ago continued so I know that I had had this problem for a while. Apart from this, balance was OK and work and my active lifestyle mostly went on as normal.

Pre-op the experience was as good as it could be, a bit apprehensive but obviously the work needed to be done so just tried to keep my mind busy and away from it. The surgery took just under 4 hours as an afternoon patient, I was put to sleep under general anaesthetic. Although the procedure is listed as a daycase, I was kept in overnight. In the end they just did the mastoidectomy because of the significant extent of the disease which had dissolved one of the ossicles as well as starting to eat away at part of the skull. On top of this the ear has been infected for some time which had been picked on my pre-op visits and was unresponsive to stronger and stronger medication, this apparently had caused a significant amount of inflammation. On the positive side the eardrum had not been affected.

As I mentioned in my opening post, I was apprehensive about all the various risks and side effects of the surgery. So far, fingers crossed, these have been minimal, which was the biggest surprise to me. The pain so far has been minor considering what has been done, a lot less than expected, especially considering the severity and extent. I was given opiates just in case but I doubt I will need them unless there is a big change to the pain level. No issues with loss of taste, small or facial movement. Balance seems OK, though I need time to find my sea legs again and will be walking around the house only, and generally taking it easy for a while. They went in through the back of the ear so there are stitches there and it looks bruised and battered, in time this will improve.

I have packing in the ear at the minute, pretty sure though the hearing is gone for now, no great surprises there. It was mostly gone anyway since an ear infection a few years ago so not as great a loss as it could have been.

The big question – change in tinnitus? It has only been 4 days so too early to tell, but so far there is no change to my existing tinnitus.

Back to work in a couple of days. I’ll be added to the NHS waiting list for the ossiculoplasty which will be done in about a year’s time. They will then go in again to check to make sure all trace of the disease is gone and try to rebuild the ossicles, if possible. In the meantime will just continue to recover.